Archives for January 2018

Following on from my last post I just thought I’d do an update on how we got on and what happened. It was long and tiring as well as exciting and interesting and, as expected, our little lady was simply amazing.

But before I start I just wanted to say a big thank you to everyone who took the time to either comment on my last post or to email me to wish Lucia luck and to share your experiences. It means so so much to us to have support and encouragement from you all as we continue to find our way through this condition.

Here we go

We arrived at the hospital about 9am and met up with Lucia’s therapist, Lynne, and headed down to the Radiology Department. We had told Lucia she was going to get special photos taken of the inside of her legs – a bit like an X-ray – but hadn’t mentioned the injections at this point.

The radiologists were brilliant with her. So friendly and kind and chatted to her as well as to us which we appreciated. They explained the procedure to us, including the injections between the toes – and as you can imagine, Lucia’s little smile turned to fear. But they were very quick to reassure her that they would be putting lots of magic numbing cream between her toes as well as some freeze spray so she wouldn’t feel anything.

So on went the magic cream and we went back out to sit in the waiting room for half an hour for it to take effect. She sat up on Daryn’s knee with a little table and we gave her the brand new colouring book and pens we had got especially for the day and she happily coloured in without mentioning the injections at all.

The toughest part

Then we were called into the room where she was to lie down on the bed for the injections. They had a tv all set up and a choice of DVDs – Peppa Pig made the cut so she lay down to watch a few episodes while we got the worst bit of the day over. And she was amazing. She lay like a little darling while I held her hand and chatted to her to try and stop her looking at the needles. She knew they were coming but she lay still and let the radiologists do what they had to do.

This part was tough. One had to hold her toes apart while the other injected the dye. She whimpered and cried a little when it went in on each foot while I held her tight and Daryn tried to distract her. And then it was over.

Amazing inner strength

Lucia has an amazing inner strength. The courage and resilience she showed on this day had our hearts fit to burst. She has such a strong, fighting spirit that she draws on at times like this – and everyday living with Lymphoedema – all without even knowing it. We say so often she takes everything in her stride – but she can only do this because of that strength and the positive attitude she carries within her.

(Max has this too. He has been through 5 broken bones in 2 years and the way he got through each injury was simply incredible too. The bravery, the patience and the resilience he showed and continues to show each day makes us so very proud.)

Walking, running, dancing, scanning and repeat

Once the injections were over we felt like we were flying! We could see two ‘magic sparkles’ on the screen – one on each foot – and we were then sent off to take Lucia for a half an hour wander around the hospital. This was to try and get the dye to travel through her lymphatics before the next scan.

So we walked up and down 110 stairs, danced, skipped and ran up and down quiet corridors, got a bit lost, grabbed a cup of tea and a pain au chocolate before heading back to get scanned.

Lucia was then made comfy on the bed with peppa pig in full view, while the scanner was lowered down until it was merely centimetres away from her body. She had to lie still for about 20 minutes as the bed very slowly inched its way out from beneath the scanner which was taking constant photos of her.

She was as good as gold – had a few wriggles! – but otherwise lay cuddling her little kitty and watching peppa pig. While she was being scanned I almost felt like I was holding my breath waiting to see or hear what was showing up on screen. Turned out, not much was happening. The dye didn’t seem to have moved anywhere on either leg so we were once again sent off to try and get this moving.

Another half an hour of walking, running, dancing, skipping and stair climbing until Lucia’s little legs couldn’t take anymore and she was back up under the scanner. This time the radiologist said they could see the dye had moved up through the lymphatics of her left leg but the right hadn’t budged.

So this time we were sent away for an hour – and you can imagine how tired Lucia was by the end of it. She did about 12,000 steps overall and boy were her legs feeling it.

Our hospital travels!

Back under the scanner for some final photos but again, things on the right still didn’t seem to have moved. However, this was just a ‘first glance’ at the scans by the radiologist. We know that a lot of filtering and interpretation has to be done to read the scans so in a few weeks we hope to have a better idea of what is going on. Obviously we know her right side – which is most affected – isn’t working well but we really hope that these results will maybe give us a bit more info on why.

And then it was over…

We left the hospital after 2pm and Lucia requested a stop off at a coffee shop for a special hot chocolate and a croissant – which we were more than happy to do! We then headed home to get her some rest and a lovely bubble bath to ensure the injection sites on her toes were nice and clean. I also put some savlon antiseptic cream on too as a precaution, but thankfully there has been no redness or issues.

She was asleep by 7pm and slept a full 12 hours that night. (I wasn’t too far behind her since I had very little sleep the two nights beforehand.) Her school and teacher were fantastic as always and suggested I lift her early from school for the rest of the week to let her fully recover and get over her big day.

So now we wait and hope that in a few weeks we might have a little bit more of an insight into this condition and exactly how it affects Lucia – so watch this space.

So tomorrow is a very exciting/nerve-wrecking day for us. Lucia is getting a Lymphoscintigram carried out. This means we will finally be able to begin to understand what exactly is going on inside her little body. It’s a procedure we had read about when she was just a baby and had always been keen to get done, however, we had been told that she wouldn’t be able to have it until she was around seven or eight years of age.

But here we are – she is only five – and we are booked in to get it done tomorrow in our local hospital. When the letter arrived we were really shocked and surprised as it just hasn’t been on our radar at all. I actually re-read it a few times to make sure I was reading it right as we always thought we would have to travel to London to get it done.

We have had quite a bit of activity around the genetics side of things over the last few months (a whole other post of its own!) and this procedure is being carried out on the back of the results that we have received lately. Lucia’s Consultant Geneticist ordered the test, as what we find out through the Lymphoscintigram will be another piece added to the puzzle that we have been trying to figure out for the last five years.

So what is a Lymphoscintigram?

For those who may not know, this is an examination in which pictures of the lymphatic drainage of the limbs will be taken by a Gamma Camera after a small radioactive injection. The radioactive bit sounds a bit scary doesn’t it! Basically, Lucia will be injected between her toes with a radioactive tracer which will show up her lymphatic vessels so we can see how the drainage of her lymphatic system is working – or in her case, not working. It will take a few hours all in all and will involve a bit of sitting about and a bit of walking about.

Excitement v Fear

We are really excited to be getting it done. To finally be able to take a look inside our girl’s lymphatic system and hopefully see what we are dealing with and how we might use this information to help her. I’ve said before in previous posts that knowledge is power – so I hope this will give us more power.

When it sank in that this was happening I also started to get a little bit scared as well – which I think is completely natural as a mummy. But I am working hard at managing the fear and thinking of the positives that the information will hopefully bring. It was Max’s 9th birthday last week as well so with a weekend of birthday parties to organise I haven’t really had time to think about it all – until now.

I think my main fears are about the actual procedure itself. First of all they have to inject the dye in between the big toe and second toe of each of her little feet. That alone has me freaking out a bit. How sore would it be? Would she sit still to get it done? What happens if they inject and she pulls her foot away and the needle cuts her toes? What is the risk of infection? We are always told she cannot have any needles, injections etc put into her feet or legs because of the risk of infection yet here we are doing just that. But I have to be confident that the doctor doing the test will be vigilant and everything will be carried out to a tee.

How will she feel when the dye goes in? Will it feel strange? Will she feel nothing at all? And then after the test – how will it affect her? How much will it take out of her physically and emotionally? In a recent post (here) I have written about how her body reacts and ‘crashes’ when something big happens, so that is also playing on my mind a bit.

I have spoken to Lucia’s therapist about all of this of course and she will also attend the appointment with us which is very reassuring – for us and for Lucia. I know there will be a freeze spray for her toes to hopefully ensure she feels very little pain and we will use lots of distraction techniques so she doesn’t have to see any needles. I have spoken to her teacher to let her know she will be missing school and, if need be, will also have a recovery day. She actually suggested sending her home early for the rest of the week if she needs it which I was really appreciative of.

A new chapter

But aside from my overactive mind, my overarching feeling is of excitement as this is a huge step in our journey. This feels like the beginning of a completely new chapter in our lives, when we will finally start to understand what is actually going on with Lucia’s lymphatics. When we discover what has or hasn’t formed properly. What is there or what isn’t there. Is she missing vessels? Or nodes? Or both? And where exactly?

The results will tell us so much and hopefully open up so many more doors for us. Whether it be tailoring her daily therapy to better suit her or looking into the possibility of micro-surgery in the future – who knows? But we will finally have some more answers that we have wanted and needed for years. We know there are other tests and procedures that can also be carried out that might even look more in-depth, but this is a fantastic starting point.

So wish us luck – I barely slept last night and when I did my dreams were very strange so I’m pretty sure tonight will be the same. I have packed a bag of snacks and drinks, toys and books and plenty of cuddles from mummy and daddy! But, knowing Lucia, who always manages to take everything in her stride, she will no doubt handle it all superbly. And we will be there to hold her hand every step of the way.

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a little bit about us

Hello and welcome to Little Miss Lucia’s Lymphoedema Life blog! Lucia is my beautiful daughter, born on 12/03/12 with all ten fingers and all ten toes. However, her 10 perfect toes were puffy, as were her feet and legs. After months of tests and hospital appointments she was finally diagnosed with Primary Lymphoedema. Read More